Hello

I am a consultant in service design, innovation and product management. For more than 15 years I worked in product strategy and design leadership in the amazing world of web and mobile media. Before that I was a newspaper journalist and history student. I'm on the web at mattedgar.com.

I was honoured to be invited to talk at Health Product People at the Department of Health and Social Care this week, especially so because I was on the same bill as Hadley, Ian and Kassandra, all of whom were brilliant. I loosely titled my talk “Stop disempowering people.” (Thanks to Ian for photo of me in full flow.) Here’s roughly what I said…

Text on back of phone: “What is the user need?”

This is former UK Government Chief Technology Officer Liam Maxwell’s phone. On the back he famously had the words, “What is the user need?” When a meeting seemed to be going off track, down some rabbit hole of business sophistry, Liam would show people the back of his phone. User needs are always a good place to start.

But then where? And which users, which needs?

I talked about how, in health and care, we need to consider people’s clinical, practical and emotional needs. (Thanks to Janet Hughes for framing that so pithily for us.)

I also laid down a challenge to the assembled product people: We talk a lot about empowering people. But who are we to empower anyone? Everyone starts with power; it’s our job to stop them being disempowered.

Illness, disability, social circumstances and fear can all be disempowering. So, unfortunately, can be the complexity of the health and care system, and the way we treat people within it.

Recently I heard the story of someone who had lived with anxiety, and had developed their own ways of coping with it. Things went downhill for them the day they were referred to a service with a long waiting list. While in that limbo, they were disempowered – they knew they needed professional help, but had no way of accessing it. The service had taken someone who was managing, and disempowered them, made things worse before making them better.

Digital service, done right, can help people to recover their power over their own health and care.

I gave the example of a new section on the NHS website about Type 1 Diabetes. Our team identified that the point where people most needed help was in the weeks and months after getting a new diagnosis. Instead of structuring information around a clinical taxonomy, or around the way our services are organised, they created a section just for people who were newly diagnosed. By bringing together some key information in a simple package, they could help people take charge of their own health and care at a time when there’s a chance of being overwhelmed.

I might have subtitled the talk “People showing their phones”, because in addition to Liam’s phone, I also showed this picture…

A health and care worker pointing at her very old, battered, dumbphone

It’s from research I did before I joined NHS Digital, as part of a discovery for Leeds City Council and m-Habitat [PDF link – sorry]. We were investigating how health and care professionals could increase their digital capability. But often, the barriers turned out to be more basic than capability. Research participants would show us the battered dumbphones they’d been given to do their jobs. Fix this first, they’d say, then we’ll be interested in the digital tools you have to offer.

We met social workers who were trusted to go into difficult situations, and make decisions with massive implications for families’ futures. Yet they hadn’t been trusted to connect to the wifi at a local health centre. (The situation in Leeds has, I believe, got much better since then!)

It became clear to our whole project team that if we didn’t empower our workforce, they could never empower patients or service users.

Our new design principles are intended to empower. They don’t tell people how to do their jobs – but rather provide a set of principles within which anyone can apply their own expertise, and their understanding of the situation at hand.

If we’re serious about putting people in control, we need first to free our minds of deficit thinking. I presented four manoeuvres that could help to do that.

1. User needs assets

The first, and perhaps most obvious, is to mitigate the deficit thinking implicit in the term “user needs” by remembering also to consider users’ assets – what they have and can do, not what they lack or need fixing.

Assets are a design material, something we can work with to help people achieve the outcomes they seek.

For example, a user might need to exercise more, but their love of music is the asset that suggests dance classes as a good way to get started.

2. Capability stories

Who is the hero of the user stories you write? Make sure it’s the user by focusing on the last part of the construct, the bit that starts “so I can…”

Let’s call it the capability story, something that doesn’t just solve short-term problem, but leaves the user stronger and more able than before.

For example:

“As a person who has just been diagnosed with type 1 diabetes, I need to learn how to count carbs, so I can control my blood glucose levels.”

“As a person with memory problems, I need information that’s easy to understand, so I can decide for myself.”

Or maybe even:

“As a visually impaired web user, I have a screen magnifier on my phone so I can read web pages, provided they’re well designed and coded.”

3. Ladder of participation

Sherry Arnstein‘s ladder of citizen participation posits that there are different levels of involvement, from manipulation, through placation, and rising up through partnership to true citizen control.

Nobody wants to feel manipulated, and when they do, it’s unlikely to achieve the manipulator’s intent.

In digital service, the most passive level is being treated as a data subject – a bundle of behaviour to be analysed and influenced.

We try to avoid casting the people who help us with user research as lab rats – not testing the user, but testing with the user, taking part in research.

But let’s not stop there. I was on a team at Co-op Funeralcare with four funeral directors who were taken off funeral duties for 6 months to help the digital team design new tools and workflows.

In health and care, we should consider patient leaders as our most esteemed stakeholders, invite them to our sprint reviews, and give them seats on our programme boards.

I wanted you to see that film – 70 years old this year – because its promise, of universal healthcare, free at the point of need, is as relevant today as in 1948. But much has changed in that time. 97% of people born in Britain since 5th July 1948 – myself included – have been born in the NHS. The cartoon baby at the end of that film is now himself a cartoon pensioner. He is living a longer, healthier life than his cartoon parents. Meanwhile medicine is transformed. We’re on the cusp of another revolution in genomics and personalised medicine.

I work for an organisation called NHS Digital. We’re the national provider of data and technology services for health and social care.

Our users are:

53 million patients and the public across England

1.3 million health and care professionals

We support:

the scientific research community who use NHS-scale data for research, and

the service community – the people who work every day to keep the health and care service functioning, and to make it more efficient.

As head of design, I’m privileged to work with a great team of designers, user researchers and others who together are designing and delivering some vital tools and services in support of that vision. I want to tell you about that design capability. I want to show you some of the things we’re making. And I want to think about the future of health and care, and how design has a vital role to play in realising its promise.

Design capability

Let’s start with the design capability we’re building. Around 40 designers work on services used by patients and professionals across the complex health and care ecosystem. There are a few services – like the national NHS website – that we design and build as national solutions from the ground up. But for many others, the digital bit we deliver nationally is just a small part of someone else’s end-to-end service, including elements bought and built locally by NHS organisations or third-party suppliers.

The make-up of our design team reflects this:

23 interaction designers

10 service designers

5 graphic designers

We have interaction designers working directly on the digital services we deliver ourselves. They also need a graphic design sensibility, because we’re working with one of the UK’s most trusted brands, the blue lozenge. Above this, we’re building our service design capability, to be able to design health and care services, as Lou Downe at GDS says, from end-to-end and front-to-back.

It won’t come as a surprise to anyone who knows UK government design practices that our designers work in agile, multidisciplinary teams, along with product managers, user researchers, developers and other specialist roles.

Working at health service scale gives our designers another responsibility – to talk to each other – individuals and interactions over processes and tools. As the team grows, we’re also investing in design leadership capability – to have a mix of experience and seniority, a career path, and job descriptions. I might be the only person in the team who’s excited about this, but we recently got organisational sign-off for a complete set of designer job descriptions on the same NHS pay scales as nurses, pharmacists, and managers.

When I’m explaining what we do to non-designers – and, believe me, I spend a lot of time doing that – I always fall back on Jared Spool’s wonderfully economical definition of design as “the rendering of intent.” Intent without rendering gives us a strategy but cannot make it real. Rendering without intent may be fun – may even be fine art – but is, by definition, ineffective. Every one of our designers must be able to explain the intent behind their work.

Because in health and care, intent is varied and complex. User needs for health and care services come in at least three flavours:

There are clinical needs – people expect the services we offer, and the tools we recommend, to be clinically safe and effective. But that alone is not enough.

To be adopted and used, services must meet people’s practical needs in the context of their lives. If that context is mobile, the service must be designed mobile first. If it’s to be used in the middle of the night, it needs to connect to services that are open.

Finally, it’s as important to meet our users’ emotional needs. Sometimes people go to the doctor not just for information, but for reassurance. Information could be clinically accurate, but if it doesn’t connect emotionally, the user need has not been met.

Every designer in the NHS needs intelligence and empathy. They must understand the true intent behind their services, reconciling diverse clinical, practical and emotional needs.

Too easily, people become disempowered by worry, illness, disability, or social circumstances, and (even though we don’t mean to) by the way we have designed and delivered NHS services in the past.

So we need to design for the positive role of patients and carers, to think about their assets – what they have and can do already – as well as their needs and deficits. We need to co-design with patients, staff, family carers and voluntary sector who all make up our service community.

Finally we need a continual focus on digital inclusion and accessibility, because the NHS is for everyone, and those with the greatest health needs are also the most at risk of being left behind digitally.

This is Hastings, where our partners on the NHS Widening Digital Participation programme have been developing models of digital health interventions for people who are homeless or at risk of homelessness.

Show the things

For a long time, we had this quote on the wall by the team working on the NHS website redesign:

“It’s just a website, We’re not going to the moon.” Mikey Dickerson on ﬁxing healthcare.gov

This summer, we transitioned the national NHS website to a new mobile-first, accessible platform. In 2018, this should be basic stuff really, but through a series of policy twists and turns, getting to this point was a big deal. We topped it off with a new name. In research, we asked people what they called it. And we used the words they used. So the site formerly known as NHS Choices is now simply “The NHS website.”

It’s just a website – with more than 48 million visits per month. That’s a quarter of all health-related web traffic in the UK. People expect a different relationship with healthcare, as well as different channels to access it.

There’s good evidence that people in control of their own health and care get better health outcomes. So while we’re here as the NHS for you in the times of greatest need, we also want to help you look after your own health and wellbeing even when you’re feeling fine.

The NHS website has to be there for users in many contexts, needs and emotional states. We have to design for the end-to-end user journey – whether a short, acute, episode of care, or management of a long-term health condition. Making the whole journey visible to everyone involved is powerful, because otherwise no one professional or organisation ever sees the whole picture.

One team looked deeply at the experience of people with Type 1 Diabetes. They mapped a whole journey from someone not even knowing they have a problem, through the trigger that leads to diagnosis, getting to grips with a potentially lifelong condition, and over time confidently managing their wellbeing. They found – and this has echoes in other conditions too – that the point at which the NHS website could help most is the first weeks and months after diagnosis.

Another team has taken the triage pathways that underpin the 111 non-emergency phone service and turned them into an online service. The online service is designed to get people to the help they need while taking pressure off the telephone service. But the big picture here is important, if we get it wrong, we could send worried well people in greater numbers to accident and emergency departments.

Confidentiality, trust and consent are big, complex issues we have to navigate. We have to understand them when delivering a simple, secure way for people to log in to NHS services. And we’re giving every patient control over how their data can be used beyond their own direct care.

Design doesn’t stop at the big picture. We also have to care about the details. Here, for example, is a page on the old NHS Choices website about paracetamol. The information on the old website was clinically safe and accurate. You’d expect nothing less of the NHS. But, in research, one group in particular – parents with young children – told us the way it mixed information about adults and children was disconcerting. They worried about accidentally giving an adult dose to their child. So we’re splitting the page in two – one about paracetamol for children, another about paracetamol for adults. That way we can meet not only the clinical need, but our users’ practical and emotional needs as well.

We had to diverge before we could converge on a single set of styles. When I joined the team a bit more than a year ago, everyone was telling me we had to deal with the inconsistent styles that were springing up in different teams. But I worried we were in danger of getting stuck too soon at a “local maximum”, super-optimising the first designs the NHS alpha team had come up with. So I made myself unpopular by telling designers to spend a bit longer solving their own problems, designing solutions in response to user needs.

When we did come to converge, through a process of patient design diplomacy by Dean, our lead designer, I believe the results were stronger for this extra round of divergence.

While we’re getting our own house in order, developing a consistent set of styles and design principles for the nationally-delivered NHS services, patients the public, and professionals experience a patchwork of interactions commissioned and delivered in many different ways across the wider NHS family. We want to make experiences consistent, no matter whether you’re using the national website, or a condition-specific app, or a service built by one of your local NHS organisations.

So we’re publishing our user-centred design standards, patterns and practices in a new NHS digital service manual. We’re working across the system to do this, and combining good public sector practice, such as the GDS design principles, with the things that make the NHS unique. The service manual team had hoped for a soft launch, but the beta has already been well-received, and I reckon we’re going to speed up this work in the near future.

Aside from the NHS website, we’ve had a team building a beta version of a new NHS app.

Design for the future

What role might human-centred design play in realising the promise of new medicine and technology? Look at the amazing trajectory of human understanding of DNA, RNA, enzymes, proteins, the genome, and the mechanisms by which they interact. This stuff will transform – is already transforming – our relationships with medicine. Crucially this generation of scientists are looking inside a black box, where their predecessors could observe its effects but not its inner workings.

At the same time, fuelled by petabytes of readily available data to digest, computer science risks going the other way in the framing of artificial intelligences: moving from explicable, simple systems to ones where it’s allowed to say, “this stuff is so complex that we don’t know how it works. You have to take it on trust.”

When we apply artificial intelligence (AI) to healthcare, transparency is essential; black boxes must be considered harmful. It’s not just me saying this. Here are the words of the Institute of Electrical and Electronics Engineers (IEEE):

“Software engineers should employ black-box software services or components only with extraordinary caution and ethical care, as they tend to produce results that cannot be fully inspected, validated or justified by ordinary means, and thus increase the risk of undetected or unforeseen errors, biases and harms.” — Ethics of Autonomous & Intelligent Systems

Transparency must be the order of the day. It comes in (at least) two flavours: the first is clear intent; the second, understandable operation. Both are under threat, and designers have a vital role to play in saving them.

When any technology moves from pure to applied science, intent must be centre stage. If we fixate too much on the computer science of AI, and not enough on the context of its application, intent will always be unintentionally obscured.

Many discussions about the “ethics” of AI or genomics are really, I think, discussions about the opacity of intent. If we don’t know who’s setting the goals for the machine, or how those goals are derived, how can we know if the intent is good or bad? For health and care, we have a new code of conduct intended to make sure this doesn’t happen.

“…computers don’t have goals of their own. The fact that a computer is following any goals at all can always be explained with reference to the goals of some human agent. (That’s why responsibility for the actions of AI systems lies with their users, manufacturers and/or retailers – not with the systems themselves.)” — Robot says: Whatever

It’s time for designers to double down on intent – true human intent that can be difficult to encode. In a domain as complex as health and care, intent is rarely straightforward. It can be changing, conflicting and challenging to untangle:

a boy was triaged on first contact as in less urgent need, but has suddenly taken a turn for the worse

an elderly woman wants to get home from hospital, but her doctors need first to be sure she’ll be safe there

the parents want to help their children lose weight, but know that pester power always leads them back to the burger chain.

User-centred design must clarify who the service is for, what problem they’re trying to solve, and what benefits we expect them to realise.

It’s time for designers to double down on intent, and – let’s be honest – this is not an area where design has always covered itself in glory. We know what design without intent looks like, right? It’s an endless scroll of screenshots presented without context – the Dribbblisation of design. If you think that was bad, just wait for the Dribbblisation of AI. Or the Dribbblisation of genomics.

Thoughtful designers on the other hand can bust their way out of any black box. Even if they’re only called in to work on a small part of a process, they make it their business to understand the situation holistically, from the user’s point of view, and that of the organisation.

Experienced designers are confident moving up and down the stack – through graphic design, interaction design and service design problem spaces. Should we point an AI agent at optimising the colour of the “book now” buttons? Or address the capacity bottlenecks in our systems that make appointments hard to find?

One of my team recently talked me through a massive service map they had on their wall. We discussed the complexity in the back-end processes, the push and pull of factors that affected the system. Then, pointing at a particular step of the process: “That’s the point where we could use machine learning, to help clinicians be confident they’re making a good recommendation.” Only by framing the whole service, could they narrow in on a goal that had value to users and could be usefully delegated to AI.

Designers are well placed to show the workings of their own (and others’) processes, in a way that proponents of black box AI never will. This is my second flavour of transparency, explainability, clarity of operation. Show what type of algorithm you are building, why that algorithm, how you check if it’s working the way you intended.

How might we:

communicate probabilities and uncertainties to help someone decide what to do about their disposition to a form of cancer?

show someone exactly how their personal data can be used in research to develop a new treatment?

involve people waiting for treatment in the co-design of a fair process for prioritisation?

In a world of risks and probabilities, not black and white answers, we should look for design patterns and affordances that support people’s understanding and help them take real, fully informed, control of the technologies on offer. This is not an optional extra. It’s a vital part of the bond of trust on which our public service depends.

The cultural ascendancy of AI poses both a threat and an opportunity to human-centred design. It moves computers into territory where designers should already be strong: exploration and iteration. I’m critically optimistic because many features of AI processes look uncannily like a repackaging of classic design technique. These are designerly machines.

Finding patterns in a mass of messy data?

Learning from experiments over many iterations?

Sifting competing options according to emerging heuristics?

User-centred design does all those things too.

Some diagrams explaining AI processes even resemble mangled re-imaginings of the divergent/convergent pattern in the Design Council’s famous double diamond. The threat is that black box AI methods are seen as a substitute for intentional design processes. I’ve heard it suggested that AI could be used to help people navigate a complex website. But if the site’s underlying information architecture is broken, then an intelligent agent will surely just learn the experience of being lost. (Repeat after me: “No AI until we’ve fixed the IA!”)

Designers should embrace the new, more design-like metaphors of rendering intent. As a profession, we have a great story to tell. We should talk more about our processes for discovering and framing problems, generating possible solutions and whittling them down with prototypes and iteration. Sure, we’ll need new skills, to change and evolve our methods – we’ve already mastered web, mobile, assistive tech. As Ursula le Guin wrote:

That’s the neat thing about technologies. They’re what we can learn to do.

As the title of Ellen Broad’s wonderful book has it, AI is ‘Made By Humans’. We can pair human intelligence with artificial intelligence, and harness the combined power of us all, through collective intelligence.

How might we give power to the communities of health and care (and help them understand each other better in the process)?

(Credit to Stefana Broadbent for framing the first three categories at a recent Nesta event on Collective Intelligence.)

Some people say that the pace of change in accelerating, and that big organisations like the NHS can never keep up. I don’t believe that. For 70 years, the NHS has known nothing but change. Back in 1948, Nye Bevan, the founder of the NHS said something remarkably prescient. I think this attitude is one of the reasons, against the odds, we’re still here as a 70-year-old institution today.

“We shall never have all we need. Expectations will always exceed capacity. The service must always be changing, growing and improving – it must always appear inadequate.” — Nye Bevan, 2 June 1948

A couple of Saturdays ago, still buzzing from a week of NHS website and service manual launches, and the NHS Expo, I took part in my first UK Health Camp.

I learned loads, put faces to names I’d long followed from afar, and posed a question of my own to a windowless basement room full of thoughtful healthcampers: “What do people need to be able to trust a digital health service?”

It’s a question I’ve been thinking about a lot, because the fifth of our new NHS design principles is “Design for trust”.

I ran the session as a loose variant of the 1-2-4-all liberating structure. Asking people to think about the question first as individuals, then in growing groups, the format was a great way of eliciting contributions from everyone in the room, then distilling down to some common themes.

At the end of the session, I left the room with a stack of sticky notes on which I had scribbled the key themes as groups reported back. Below is a summary with my own grouping and interpretation of the themes after the event.

The weighing of trust starts before we use a service, as we evaluate it to see if it’s going to meet our needs.

A few groups in the session talked about relevance: will it help me achieve what I need to do? To be relevant, a digital service will likely have to be part of an end-to-end journey, quite possibly including both digital and non-digital elements. Even in this digital world, having an offline presence is one of the things that can give a service credibility.

Once we believe a service might be useful, the next question, not far behind, is “has it been tested – for safety, practicality, and effectiveness?”

We trust things that come recommended by people we trust. Reputation matters, especially when expressed through peer recommendation. We make decisions about services in a web of relationships; a service will be more trusted if it is “culturally embedded”. In the context of British healthcare, there’s nothing more culturally embedded than the NHS.

To earn trust fully, there are things a service has to demonstrate in use.

Is it confidential? People set high standards for data protection, security and privacy. A service shouldn’t collect data it doesn’t need, and must be totally anonymous when you need it to be.

Is it personal? Provided confidentiality is assured, one of the ways a service can gain credibility is by showing information that only it should know. While anonymity is sometimes necessary, so too can be personalisation.

Is it transparent? Transparency of intent and clarity of operation are essential for any digital health service. Why is it asking me this? How did it get to that answer? Is it clear what I’m consenting to?

It is professional? The boring qualities of stability, reliability and consistency should not be underrated. If they go missing, trust in a service will be rapidly undermined.

Finally, there’s a quality of continuous improvement. Without this any trust gained is likely to be short-lived. Does the service take feedback? Is it accountable for its actions? Can you see in its present state the traces of past user feedback? “You said… we did…”

Those were the combined ideas of a self-selecting group one Saturday in Manchester. But tell me what you’d add? What would you need to be able to trust a digital health service?

On my holiday, I started reading into some topics I ought to know more about: artificial intelligence, genomics, healthcare, and the fast approaching intersection of the above. Here follow some half-baked reckons for your critical appraisal. Please tell me what’s worth digging into more. Also where I’m wrong and what I might be missing.

1. Opening the black box

By Yikrazuul CC BY-SA 3.0, from Wikimedia Commons

Reading Siddhartha Mukherjee’s ‘The Gene: An Intimate History’, I discovered the amazing trajectory of human understanding of DNA, RNA, enzymes, proteins, the genome, and the mechanisms by which they interact. There’s no doubt that this stuff will transform – is already transforming – our relationships with medicine. Crucially this generation of scientists are looking inside a black box, where their predecessors could observe its effects but not its inner workings.

At the same time, fuelled by petabytes of readily available data to digest, computer science risks going the other way in the framing of artificial intelligences: moving from explicable, simple systems to ones where it’s allowed to say, “this stuff is so complex that we don’t know how it works. You have to take it on trust.”

When we apply artificial intelligence (AI) to healthcare, transparency is essential; black boxes must be considered harmful.

It’s not just me saying this. Here are the words of the Institute of Electrical and Electronics Engineers (IEEE):

“Software engineers should employ black-box software services or components only with extraordinary caution and ethical care, as they tend to produce results that cannot be fully inspected, validated or justified by ordinary means, and thus increase the risk of undetected or unforeseen errors, biases and harms.” — Ethics of Autonomous & Intelligent Systems [PDF]

Transparency must be the order of the day. It comes in (at least) two flavours: the first is clear intent; the second, understandable operation. Both are under threat, and designers have a vital role to play in saving them.

2. The opacity of intent

It’s a commonplace to say that technology is not neutral. I won’t labour that point here because Sara Wachter-Boettcher, Ellen Broad and others do a good job of highlighting how bias becomes embedded, “AI-washed” into seemingly impartial algorithms. As the title of Ellen’s wonderful book has it, AI is ‘Made By Humans’.

That doesn’t seem to stop stock definitions from attempting to wall off AI beyond the purview human control:

“In computer science, AI research is defined as the study of ‘intelligent agents’: any device that perceives its environment and takes actions that maximise its chance of successfully achieving its goals.” — Wikipedia

But what goals exactly? And how did the AI get them? The Wikipedia definition is silent about how goals are set, because, in the words of Professor Margaret Boden, “the computer couldn’t care less.”

“…computers don’t have goals of their own. The fact that a computer is following any goals at all can always be explained with reference to the goals of some human agent. (That’s why responsibility for the actions of AI systems lies with their users, manufacturers and/or retailers – not with the systems themselves.)” — Robot says: Whatever

When any technology moves from pure to applied science, intent must be centre stage. If we fixate too much on the computer science of AI, and not enough on the context of its application, intent will always be unintentionally obscured.

Many discussions about the “ethics” of AI or genomics are really, I think, discussions about the opacity of intent. If we don’t know who’s setting the goals for the machine, or how those goals are derived, how can we know if the intent is good or bad?

Moreover, true human intent may be difficult to encode. In a domain as complex as health and care, intent is rarely straightforward. It can be changing, conflicting and challenging to untangle:

a boy was triaged on first contact as in less urgent need, but has suddenly taken a turn for the worse

an elderly woman wants to get home from hospital, but her doctors need first to be sure she’ll be safe there

the parents want to help their children lose weight, but know that pester power always leads them back to the burger chain.

In these situations, even Moore’s Law is no match for empathy, and actual human care.

3. Designers to the rescue

Design, in Jared Spool’s wonderfully economical definition, is “the rendering of intent.” Intent without rendering gives us a strategy but cannot make it real. Rendering without intent may be fun – may even be fine art – but is, by definition, ineffective.

It’s time for designers to double down on intent, and – let’s be honest – this is not an area where design has always covered itself in glory.

We know what design without intent looks like, right? It’s an endless scroll of screenshots presented without context – the Dribbblisation of design. If you think that was bad, just wait for the Dribbblisation of AI. Or the Dribbblisation of genomics. (“Check out my cool CRISPR hacks gallery, LOL!”)

Thoughtful designers on the other hand can bust their way out of any black box. Even if they’re only called in to work on a small part of a process, they make it their business to understand the situation holistically, from the user’s point of view, and that of the organisation.

Design comes in many specialisms, but experienced designers are confident moving up and down the stack – through graphic design, interaction design and service design problem spaces. Should we point an AI agent at optimising the colour of the “book now” buttons? Or address the capacity bottlenecks in our systems that make appointments hard to find?

One of my team recently talked me through a massive service map they had on their wall. We discussed the complexity in the back-end processes, the push and pull of factors that affected the system. Then, pointing at a particular step of the process: “That’s the point where we could use machine learning, to help clinicians be confident they’re making a good recommendation.” Only by framing the whole service, could they narrow in on a goal that had value to users and could be usefully delegated to AI.

4. How do you know? Show your thinking.

Crucially, designers are well placed to show the workings of their own (and others’) processes, in a way that proponents of black box AI never will.

This is my second flavour of transparency, clarity of operation.

How might we:

communicate probabilities and uncertainties to help someone decide what to do about their disposition to a form of cancer?

show someone exactly how their personal data can be used in research to develop a new treatment?

involve people waiting for treatment in the co-design of a fair process for prioritisation?

In a world of risks and probabilities, not black and white answers, we should look for design patterns and affordances that support people’s understanding and help them take real, fully informed, control of the technologies on offer.

This is not an optional extra. It’s a vital part of the bond of trust on which our public service depends.

5. Designerly machines

Applying fifty iterations of DeepDream, the network having been trained to perceive dogs – CC0 MartinThoma

The cultural ascendancy of AI poses both a threat and an opportunity to human-centred design. It moves computers into territory where designers should already be strong: exploration and iteration.

I’m critically optimistic because many features of AI processes look uncannily like a repackaging of classic design technique. These are designerly machines.

Dabbers ready, eyes down…

Finding patterns in a mass of messy data? Check!

Learning from experiments over many iterations? Check!

Sifting competing options according to emerging heuristics? House!

Some diagrams explaining AI processes even resemble mangled re-imaginings of the divergent/convergent pattern in the Design Council’s famous double diamond.

“A diagram outlining a forward pass though our three 3D generative systems.” – Improved Adversarial Systems for 3D Object Generation and Reconstruction [PDF]The threat is that black box AI methods are seen as a substitute for intentional design processes. I’ve heard it suggested that AI could be used to help people navigate a complex website. But if the site’s underlying information architecture is broken, then an intelligent agent will surely just learn the experience of being lost. (Repeat after me: “No AI until we’ve fixed the IA!”)

The opportunity is to pair the machines with designers in the service of better, faster, clearer, more human-centred exploration and iteration.

Increased chatter about AI will bring new more design-like metaphors of rendering that designers should embrace. We should talk more about our processes for discovering and framing problems, generating possible solutions and whittling them down with prototypes and iteration. As a profession, we have a great story to tell.

A resurgent interest in biology, evolution and inheritance might also open up space for conversations about how design solutions evolve in context. Genetic organism, intelligent software agent, or complex public service – we’re all entangled in sociotechnical systems now.

How can we stop disempowering people?

The session I pitched had a deliberately ambiguous title – I wanted to know, when participants saw the word “people,” whether they thought first of the people we serve, or the people who deliver service? It turned out to be both, and a consensus that we can only empower citizens if staff are also empowered. It’s also my contention that it’s not the government’s job to empower anyone – everyone should start with power, our job is not to disempower them.

At the end of the session everyone came up with a thing they could do to stop disempowering people. Sticky notes were as follows:

Earlier this year I set out to understand more about the history of the National Health Service. As well as reading some books recommended by colleagues, I’ve picked up a few original 1948 documents from online auctions. Some archaic language aside, they’re as fresh and relevant today as they were 70 years ago.

Exhibit 1: a variant of the wonderfully clear and concise leaflet sent to every household to explain the new service. The version I have was for service men and women, a reminder of the NHS’s roots in, and proximity to, the horrors and the heroic national collaboration of the Second World War.

‘The New NATIONAL HEALTH SERVICE’ leaflet, 1948

As a value proposition, the introduction to this leaflet is hard to beat:

It will provide you with all medical, dental, and nursing care. Everyone — rich or poor man, woman or child — can use it or any part of it. There are no charges, except for a few special items. There are no insurance qualifications. But it is not a “charity”. You are all paying for it, mainly as taxpayers, and it will relieve your money worries in time of illness.

See the radical ideas packed into those 6 short sentences?

Comprehensive coverage – medical, dental and nursing

For everyone – rich and poor alike

Coverage of women and children equally with men (pre-World War II, many men were in work-based insurance schemes, but their wives and children had no such coverage)

Emphatically not a “charity”, but rather a collective endeavour by us all

It will relieve your money worries – because the stress of illness can only be compounded by financial hardship.

Every recipient of the leaflet also had a thing to do: “Choose Your Doctor Now”. Despite the scale of this national undertaking, the NHS took flight on the wings of millions of individual choices – people registering themselves and their loved ones with a family doctor. (Whether those GPs would take part at all was a close-run thing demanding give and take from Nye Bevan on one side and the GPs’ leaders on the other.)

Exhibit 2: fast forward a few months to this booklet, published by the Ministry of Health (loving that logo) soon after the NHS’s creation.

A thicker, more reflective read than the first leaflet, this one was produced not long after the foundation, when most people had chosen a doctor, but the new system was just finding its feet. The first of many attempts to show who does what…

Compare with this 2017 version from the King’s Fund…

The final, and most forward-looking, chapter of the second booklet is my favourite.

6. BUILDING THE NEW SERVICE

THIS BOOKLET has tried to explain the reasons for the new deal in medical care, and the organisation created for it by the Act. It has described what the medical services look like in the beginning, soon after the Act is in force. What will they look like in ten years’ time? The Act is only the means of getting the new deal started. In what direction will the new partnership of the professions and the ‘consumers’ work to carry out their purpose of meeting the medical needs of the people adequately, everywhere?

See how the new partnership comes with scare quotes around the word ‘consumers’? Perhaps the authors hoped we’d find a better noun some time in the next decades. We’re still working on that.

The “six main aims” bear repeating – all having been reprised many times in the last 70 years…

(1) Up-to-date material resources. A large programme is needed as soon as it becomes practicable, for rebuilding and re-equipping hospitals and clinics and for constructing health centres.

(2) Adequate human resources. More health workers of most kinds will have to be trained as soon as possible.

(3) Better distribution of resources. The aim must be to bring more of the services to the places where the patient can conveniently use them.

(4) Greater team work in serving the patient. This is necessary among family doctors, within the hospital service, and between all the services, to avoid the departmentalising of medicine which prevents doctors from seeing the patient as a ‘whole person’ rather than as a ‘case’.

(5) Encouragement of variety and experiment. Medical needs must be adequately met everywhere, but it would be wrong for them to be met everywhere in the same way. Medicine thrives on experiment and comparison of different ways of doing things; uniformity of method or belief is its enemy.

(6) Encouragement of a preventive and ‘positive’ outlook on health. All agree that the nation will not be using its doctors to the best advantage so long as they are conﬁned so much to healing and have so little time for preventing illness.

In places the language of this booklet is breathtakingly modern. I had to do a Google Books search to confirm that the phrase “whole person” was indeed contemporaneous. Also note…

The emphasis on adequacy as an ambitious but attainable goal

The need to bring services closer to where people are

Team work across departments and parts of the service

My favourite: variety and experiment! “uniformity of method or belief is its enemy.”

The first of many pleas to prioritise wellbeing and prevention of illness

There’s a sober assessment of the nascent service’s chances. Transformation takes time, costs money and is inherently uncertain…

In the hospital and specialist services the pursuit of these aims will take time. There are still too many awkward and out-of-date buildings; even the existing accommodation cannot be fully used for want of nurses and domestic workers. There are too few of many kinds of specialists, and the few there are are not always well distributed in different parts of the country. The work of the specialist has to be carried beyond the hospital doors more than in the past.

Nevertheless, the Service must be run with proper regard for economy, and capital expenditure has to be kept down to a minimum. Only the most urgent schemes for the extension or repair of hospitals can be permitted. Nor is the building of comprehensive health centres possible on any scale while so great a part of our building resources has to be locked up in urgently needed houses, factories and schools. More study is also needed of the kinds of centres most worth trying out before any large-scale experiments are launched. The building and testing of health centres in action, in different forms and circumstances, in large towns and small, in suburbs and country areas, is a task for the next few years. During that time a great many, perhaps most, family doctors will continue to practise outside health centres, though various looser forms of ‘grouped’ practice and other means of improving the efficiency of the family doctor without comprehensive health centres may prove valuable especially in country districts.

For the time being the main thing is to get the Service into good running order and to keep on improving its efficiency. All big social changes start with a certain amount of uncertainty, until people get used to the new way of doing things; and this Service cannot be comprehensive in the fullest sense until the country is farther along the road to prosperity and a rising standard of life.

Implicit trust in the public as active participants, on whose wise decisions success depended…

The public has still to learn how to use the new facilities properly and economically; and those who are actually running the Service have to get used to new conditions and changing needs. But if the various professions really join forces with the laymen in the organisation described in this booklet, they can carry out a progressive new deal in medical care which will redound to the benefit of all.

A look back, as well as forwards…

The National Health Service represents the completion of the work which was started just over a hundred years ago with the first Public Health Act. Then the emphasis was on environmental conditions — pure water and proper sewerage.

Finally a chance and challenge that stands to this day…

Now the National Health Service brings together the personal services. It offers a chance — and a challenge — to build the most efficient health service in the world, and one which as the years go by will add steadily to the nation’s fitness, happiness and working capacity.

Both documents were subject to Crown Copyright for 50 years, so are now in the public domain. I have scanned and shared them on Wikimedia Commons:

Other people’s jobs are endlessly fascinating. At a birthday celebration a couple of years ago I got talking to Johnny, a family friend who works as an aquarium curator. He told me a surprising thing about his work: how little of his time he spends actually looking after the fish. Johnny’s job is to look after the water. “Look after the water,” he said, “and the fish will take care of themselves.”

So it is with design leadership. Our designers have different specialisms – service, interaction and graphic design. They’re embedded across a wide range of endeavours, both public and professional facing. They’re the ones who see users in research, and stakeholders in show and tells. My role is not to tell them how to design; it’s to create the safe and supported conditions in which they can do their best work, individually and collectively. When those conditions come together, it’s a wonderful thing.

This week it’s one year since I joined NHS Digital to lead the design team. I’ve been thinking about what has changed, and what we have yet to achieve. As ever, views all my own.

Growing a team

Our third whole design team event took place a couple of weeks ago in Leeds. We ran two rounds of rapid fire show and tells: 14 designers showing their work in the space of 90 minutes. I was massively impressed that every designer who presented was so good at telling their story, under time pressure, to a room of 35 people.

We’re lucky to have two excellent lead designers. Tero heads our growing service design practice, while Dean has taken on interaction and graphic design for the NHS website. Design-minded product managers Emma, Ian, and Sophie join us in our fortnightly design leadership meetings. Stephen, who left a couple of months ago, was always insightful, knew his way around the organisation, and took on the unglamorous task of writing job descriptions. I miss our Friday morning coffees.

Hiring for designers in both London and Leeds has been a long journey but rewarding in the end. Over the past few months, it has been great to see the new seniors settling in. I believe we now have talent at every level, and a good foundation for design leadership here in the future. If my bike went under a bus on Chapeltown Road tomorrow, weekly design huddles would still happen in Leeds and London. I count that as a win. Having designers who talk to and trust each other is the foundation of a coherent experience for our users. The designers and I are rewarded on the same pay scales as nurses, doctors, and other NHS professionals. That’s a sobering reminder of the value each new recruit to the team is expected to add.

A year of recruitment in numbers:

Just over 50% of the design team are now newer than me to NHS Digital

Of the permanent staff, 11 are still here from the team when I arrived, 8 are new recruits, and 3 have left

Among contractors, it’s 1 still here, 7 new, and 3 left

On top of that are a dozen or so supplier staff with whom we work closely as members of our extended team

Permanent team, contractors and supplier staff alike, 100% of them want to do their best for users and the health service.

Designers work best as part of multi-disciplinary teams. After a year here, I’ve had the privilege to see a few of those teams go through the delivery cycle from discovery, through alphas and on to release private and public beta versions. It hasn’t always been straightforward. Some teams have got stuck. Some things have stopped when we realised they would not achieve the outcomes we hoped for. But it does feel that teams are getting slicker at this – learning about user needs, and learning how to work together as true multidisciplinary teams. I’m fortunate to be part of a senior leadership team with brilliant product, delivery, technology and content leaders too.

As a design team, we have access to two larger communities of practice. NHS Digital’s Digital Service Delivery profession includes design along with user research, product management, delivery management and content design. We’re also part of the amazing cross-government user-centred design community, giving us access to Government Digital Service (GDS) training and community events. I especially appreciate my meetings with Lou Downe and the other government heads of design.

Here are some things I’ve learned…

Power is a big theme in health and care.

My focus has been with teams designing and delivering for patients, carers, and families – users who don’t work for the NHS or social care. There’s good evidence that people in control of their own health and care have better health outcomes. But I can see from our research how people’s power is diminished – by illness or disability, by social circumstances, and (though we don’t mean to disempower) by us, in the way we design and deliver health and care services.

Digital information and service have the potential to make people more powerful again. This can only happen when people can get them, trust them, understand them, decide with them, and act on them. For people to take power in the NHS, we need to work across the whole system, a partnership of patients, families, professionals, and service providers.

Sometimes we need to diverge before we can converge.

A healthy tension between divergent and convergent working should be part and parcel of any design approach.

Soon after I arrived a year ago, I worried that, in some areas, we were trying to converge prematurely on solutions that had not been tested against a wide enough range of user needs and contexts of use. To reach the required quality, we had to go through a phase of divergence in which teams went off to solve their own problems, while sharing their work and looking out for common patterns. (Patterns, by the way, are never designed; they can only emerge when teams are empowered to work independently, but transparently.)

Now, we’re back to a phase of convergence around design for the NHS website, led by teams explicitly tasked with redesign and standards creation. I have greater confidence that we’re building on firmer foundations this time, because we’ve tried more things, and understood more user needs.

I’m a design system sceptic (but we’ll probably end up with a design system anyway).

Everyone seems to be talking about design systems right now. I caution that explicit efforts to create a system can easily tend towards design for its own sake, disconnected from validated user needs and contexts of use. I hope we can keep ours rooted in reality by rotating designers through the overall redesign and standards teams, in and out of squads working on specific health condition categories and services. Nothing should get into the design system without being researched with users in multiple need states and contexts.

Rather than all swarming on the same problems, we need to conserve our energy and focus. Like birds flying in formation, each team can take a turn to lead on a design challenge, before falling back to let others fly ahead for the next stage.

Critical optimism is the order of the day.

There is a sweet spot in any job, or more generally in understanding any organisation, when you still retain a sense of surprise that anything could quite work that way, but have acquired an understanding of why it does, and of the local application of the general rule that all organisations are perfectly designed to get the results they get.

Since then I’ve tried to bottle that feeling. Healthcare certainly proves Dr Deming right: that the same system can at once be brilliant at some things and terrible at others. There can be world class care, medical and technological innovation side by side with the shocking failure waste that comes from poorly designed service. Being a permanent member of staff, I feel a responsibility to work with the grain of the system, while retaining a sense of urgency to make things better.

One of my objectives is to grow the whole organisation’s commitment to human-centred design. This definitely feels like a multi-year commitment, but I’m confident that we have director-and-above-level support for improving the quality, consistency and accessibility of digital services for NHS patients and professionals. Our head of profession Amanda has been the definition of an empowering manager. Our portfolio director Alan has an exceptionally user-centred vision for someone in a such high-profile delivery role.

Update on some things I committed to do at the 6-month point:

Develop my own capability – I am investigating leadership courses that might be right for me. Ideally, I’ll do something that brings me into contact with a more diverse range of health and care leaders, not just the ones focused on digital.

Reflect and plan – I started by block booking Friday afternoons as a meeting-free zone in my diary. Clearing emails and weekly reporting always swallowed them up. Now I’ve blocked out the whole day. I don’t always keep to it, but it’s a good reminder of the value of meeting-free time.

Listen better – There’s a bit almost at the end of David Marquet’s ‘Turn the Ship Around‘ video, in which he says you will fail repeatedly at giving control to your team, but get up and go again. That’s where I feel I am with my coaching practice right now. After some conversations, I come away kicking myself. When it goes right though, it’s so much more rewarding to hear a colleague solve their own problem than to hear myself offering my solution. Ultimately this is the only way that a design capability is going to scale.

Influence more – Lots more to do here. There are so many opportunities for improvement that our small team will never be able to address them all. By sharing standards and setting clear expectations of good practice, we can multiply our impact and give power to the many other people across the health and care system who want to make a difference with design.

Say no to more things – One of the adjustments in moving from a micro-business to a biggish organisation was appreciating that lots of things get done even if I don’t do them. Every week or so, I look through my to-do list for the things I really ought to delegate, and the things I’m just never going to do. Adding a “Not Going To Do” column in Trello has done wonders for my sense of productivity.

Say yes to more things – I’ve been lucky enough to be invited to some brilliant events and conversations. A recent highlight was working with Victoria Betton and Lenny Naar to deliver a hands-on user-centred design session at HIMSS e-Health week. In October, I’ll be speaking at Interact London, and the conference theme is “Intelligence in Design”. Fingers crossed I’ll have something intelligent to say.